This is a place where I can post family updates and ramble about things as I try to find my way since the recent death of my daughter. Life has completely changed for my sons, my husband and myself. Our faith has been a great source of comfort and we'll continue to rely on it as we press forward.

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The Story of Christmas & Silly Socks

Thursday, July 24, 2008

I just got a note from the new Peds Cardiologist. I'm going to have to get used to the way he does things I guess. Dr. D would call usually call me and give me the results from tests... although there were a lot of times that I would call him first. LOL I should call Dr. V because in his notes he said that Jessica's holter showed 1100 PVCs. What? Is that a TYPO or is this medication really helping???

Jessica has had multiple holter monitors since August of last year and most of them showed between 8,800 - over 10,000 PVCs. This one said 1,000! WOO-HOO!!!! I'm so happy that this medication is helping her and it doesn't seem to be aggravating her asthma. We are soooooo blessed!

Lately I've had many opportunities to talk to Jessica about having faith. It's nothing less than a miracle that she survived her 2nd heart surgery... a Cardio-thoracic surgeon stood there, looking at me in the eye and said so. It's nothing less than a miracle that she got her eyesight back after the stroke she had during that surgery. Many times she has cheated death including 4 years ago when she was having so many lung bleeds that she would carry a bowl around because she would cough up blood at any time. We prayed for answers and ours came in a little bottle of blue liquid. Morphine. It was a long shot but we tried it and it worked. Hospice was very helpful in the process of finding our miracle and it was very hard when they left us. But Miss Jess is only rarely - I mean, EXTREMELY rarely coughing up blood anymore. Jess said, "But now my heart is having 10,000 PVCs... and I told her to have faith that we would find another miracle to help her with that. I was soooooo excited when I got the paper in the mail and told her about it. I tried to tell her that 1,000 PVCs was 10 times better than 10,000. Blank stare. Being a 7 yr old in a 20 yr old body is a little hard... so trying to grasp the difference between 10,000 and 1,000 was kind of hard for her. So our conversation went something like this:

J: "Is 1,000 better than 10,000?"

Me: "Oh yes! MUCH better!"

J: "Is 1,000 better than 9,000?"

Me: "Yes!"

J: "Is it better than 8,000?"

Me: "Yes! And it is better than 7,000 and better than 6,000, and better than 5,000, and better than 4,000 and better than 3,000 and even better than 2,000!"

J: smiling from ear to ear: "Wow, that is good!"

Jess is scared of dying and also feeling very sorry for herself that she isn't like everyone else. She REALLY wants to have a boyfriend and get married. She wants someone to love her and take care of her. I've tried several different approaches with her since she has set in her mind that since she is 20 then she is old enough to have a boyfriend - so where is he? LOL So the last week or so every time she brings it up I remind her of all the miracles on her life. I ask her if she has faith. Does she really believe that Heavenly Father and Jesus really want her to be happy? She says Yes! Then she needs to have faith that they are watching over her and are going to make sure that she is happy.... but she needs to try to be happy NOW... and not waste her life away wishing for something. She needs to have faith while she waits and God will take care of the rest. (As I've mentioned here before that in our religion we believe that we will all be resurrected - but not reincarnated.) I'm positive that those who don't have a chance to marry and have children in this life will have that opportunity in the next - after being resurrected. Wouldn't that be wonderful for her to have a body that is perfect? One that can walk across the room without getting winded? One that won't need oxygen or a wheelchair? One that will be able to do anything she wants it to? So she needs to learn to have faith and patience. Oh my... that is a hard one! I've been telling God that I've learned patience, it's time to move on! hehe... I'm joking of course but I tell ya, some days I really feel like it. I've been taking care of Miss Jess - who has been very ill her whole life - for 20 years. I'm tired. BUT I wouldn't trade her for anything. I don't want her to leave ... but she does deal with a lot of pain. Every single day. That's hard.

We are so blessed though. We have so many people who love us and support us. I had better get to bed since I'm taking Miss Jess to have lunch at her fav restaurant: IHOP. Our SUV is out of the shop and so I can take her/ the wheelchair/ and oxygen to have a nice lunch with one of our friends from "Tu Nidito". FUN! I hope it's not too hot - nor rainy... the wheelchair lift if on the outside of the SUV and we don't want her motorized wheelchair in the rain!

Anyway, I want to keep up with my blog more often and not leave you all in the dark - so turn on a light already! ;)

Coming up in the next week: Brandon's birthday on Saturday, Sunday is always busy with church stuff (usually Karl and the boys go but I may get a chance to go too - IF I get some sleep before then), Monday is Brandon's actual birthday - 15 yrs old!!! (*yikes!), Tues is a court of honor - both Brandon and Austin have 5 merit badges that they worked on at scout camp and Brandon is advancing in rank!, and Wednesday Brandon has to have ORAL SURGERY! None of us are looking forward to that day. Poor Brandon - please keep him in your prayers.

Thursday, July 17, 2008

Oh My Word! I can't believe it's been more than a month since I updated this poor neglected blog! Soooooo much has happened... but then again, it is my life! LOL

Let's see.... what has happened:

Jessica: Had a birthday, turned 20 years old!!!!!!!! I can't believe it! The big bad CHD (congenital heart defects) that tried to take Jess multiple times while she was an infant, and again as a child, as a teenager we almost lost her ... but she has made it to "adulthood!" Something Karl and I never dared dream would happen. Of course she is still at the level of a 7 yr old but she has lived for 20 years and that's a huge accomplishment! I'll post pictures soon... I promise! Jessica's wisdom teeth are trying to come in so I'm going to have to get her in to see her dentist. He said that he will take a look but who knows if he can do anything about it.

Justen: Justen and Ravyn have decided to post-pone their wedding until December. After taking a look over living expenses, etc, they realized that Miss Ravyn needs to have a job and help financially before the wedding. It's a huge reality check, isn't it? I think that one of the hardest part of growing up is having to provide for yourself and your family. Karl and I struggled financially for quite a few years and still have to watch what we buy. It's rough going sometimes but I'm sure that Justen and Ravyn will do well once they get everything in order. We are still so happy that Ravyn is going to be a part of our family. At least it won't be so hot in December! The wedding pictures will be less likely to have sweaty, melting wedding party in them. They wedding cake won't have to be served in glasses because it melted either. hehe! I am so glad that we have more time to get everything together, too. Ravyn and I are making her bouquet... I have a picture of her holding her partial bouquet but I think I'll wait until it's completed before I post a picture of it.

Brandon: Poor Brandon has to have oral surgery on July 30th. He has an adult tooth up on the palette of his mouth which has to be surgically uncovered. They will attach a small chain to it and then to his braces and it will slowly pull that tooth down. When it's time, the baby tooth which is in it's place, will be pulled and the adult tooth can come down where it should have gone in the first place. This is the eye tooth and the oral surgeon explained to us how important the eye teeth are. According to the x-ray, his wisdom teeth are ready to be pulled too so we are going to do all that at the same time. It makes sense to sedate him only once and have him recover from surgery only once. I feel bad for him since I know how hard the wisdom teeth extraction is. I had it done one summer while I was in HS and my family went on a trip 2 days afterwards. I had the choice of either going with them or staying for a week with my aunt and uncle. I decided that I might as well go on the trip so I did. It wasn't the most enjoyable trip I've ever been on but I survived! Brandon will survive too. He also has a birthday coming up on July 28th! He will be 15 yrs old. We are having his party on the 25th. He is going to get the Mario Kart for the Wii. Yes, we broke down and let Jessica buy the Wii last month with her government money. Karl and I swore we'd never buy it and at least WE didn't. haha... j/k of course. Since Jess doesn't feel well enough to go out much we figured she should be able to use her money to buy something to help entertain herself. If the kids fight over who gets to play it then nobody does. We've found which games are too strenuous for her to play and which ones are OK for her. She gets so "blue" so easily, we have to watch her or she will be trying to catch her breath and looking like a purple grape. Poor kid.

Austin: Austin is doing well. He is involved in scouts and does his calling really well at church. There's not a whole lot going on with Austin except that he told me that he needs some "Mom and Austin" time. I have been very preoccupied with so many things that I guess I haven't spent enough time with him. He wants me to watch a movie with him so we will definitely have to do it! He and I really need to start a walking program. We are both feeling the effects of not getting enough exercise and being around food all day (all night for me).

Karl: Karl has been working his cute pattootie off hard. He's taken some off-duty jobs, had his schedule changed around and around, and helping out an officer who was involved in a near-fatal accident. Actually, I have spent some time with the officer's wife too. Officer Bobby suffered severe head injuries and wasn't expected to survive. It's been 3 1/2 weeks and he is recovering from his other injuries but his brain has a lot of healing left to do. He recognizes his wife and can walk but he is still very confused and emotional. Please pray for him and his wife, Kristi, that they will get through this. They have two small children who are staying with grandparents (who live out of state) right now. This is an amazing couple and we really hope that Officer Bobby will make a full recovery.

Karl has also been working on my craft room & laundry room and it is now time to do the texture on the walls and ceilings. One of our friends has a texture machine and is supposed to come on Saturday to make a huge mess texture the place. I'm so stressed excited! At least after the texture is done, dry and cleaned up... all we have to do is paint and put in the flooring - - - then I can MOVE IN!!! Do I dare hope?

Nancy: is in great need of a gardener... or more likely a crew of people to rip out tons of weeds that have been growing since the monsoon season started. I'm also in need of a maid... or someone with a back-hoe to clean out my mess of a house! The monsoons have brought the much needed storms to our area but of course my fibromyalgia doesn't like storms so I've been dealing with pain. Lots of it. I also have no time to myself except for the times I stay up after Jess goes to bed. Some times it's not until the wee hours of the morning. I'm not kidding. Look at the time stamp on this post. I started this post at around 3:15am and it's now 3:57 am. But I digress.

My sister, Alice, had a baby boy last week! Joseph HyrumVivaldo. We got to go and visit them and pass the baby around. He was 3 days old and soooooo cute! Poor Alice looked tired so we didn't stay terribly long. (we also respected her enough to not take pictures of her at this time) Our crew - of 6 7 (sorry Ravyn, I almost forgot to count you!) can take a toll and anyone! Jessica was so proud of herself for being able to hold such a tiny baby. Justen and Ravyn got to hold him too. I think Ravyn was a little surprised that Justen knew how to hold a baby so small but I reminded her that he held his younger brothers when they were babies and he has also held other baby cousins.

Here is Jessica... so proud to be able to hold her new cousin!

Jessica and Hyrum

Ravyn taking her turn holding Hyrum while Justen waits his turn.

Jessica playing with her other cousins, Jesse, Julie and Marissa - who are all so proud of their baby brother. (Jess had an extremely late night that night and has not been up to par since. Going out really wears her down and she has to have recovery time.) But she had a great time that night and it was all worth it!

And last but not least....

MY BABY!

She's a 2005 Nissan Altima. Karl has been stressing out so much over the price of gas and the fact that our SUV only gets 10 mpg! This car gets 22 - 31 mpg, can fit all 5 of us and the oxygen goes in the trunk. Karl is so smart... he figured out that the oxygen tubing can come through a crack in the seats from the trunk... the seats can fold down and make the already huge trunk bigger so that is an awesome way for Jess to have her O2 and it not be in the way. We still have the SUV for the times that she needs her motorized wheelchair - which would include trips to the doctor, the mall, or any other long-distance walking is required. She doesn't need it to go to some one's home so here we were (in the picture) getting ready to go to grandma & grandpa Jensen's house on the 4th of July. (pictures of that fun event to come later too!) Karl has been so much more relaxed at the price of gas now that we have a much more economical car. We were able to put 1/3 of the price down so our payments are very reasonable. It's a beautiful car - inside and out. Only 30,000 miles on it and still under warranty. Sorry guys... it's ALL MINE! (Well, I let Karl drive it from time to time though... hehe!)

So anyway... these are the major updates that I can think of... and now that it's nearly 5:00am and it's starting to get light outside, it's time for me to go to bed. No, I'm not a slow typist... I just got to playing with the SD card that can fit nicely into my laptop (which I am using right now) and I downloaded 3 month's worth of photos. Now I need to transport them to my portable (pretty) hard drive. :) *I'm soooo spoiled!!!!*